We are still at the hospital. At 5:00 this morning, the nurse
pulled up more residual formula than they wanted to see, so they slowed
down her progress. Fortunately, all the other feeds left the
appropriate amount of residuals, so Lily is making progress. Early
tonight, they gave her a bolus (where her feed is given quickly) of 45
ml. She held that one down. Now she's getting a 90 ml bolus--and
sucking the heck out of her thumb! (This could be a sign that she's
quite hungry!) I'm anxious to see how she'll do. Still, the doctors
want to get Lily to the point where she's taking the amount she takes at
home before they let her go home. I'm fine with that.
Despite being in the hospital, today has been a lovely
day. Around 7:00 tonight, I was holding Lily, and we were playing. She
kept batting me with her right hand which not only has an inactive IV
in it, but also has a board holding her hand straight. I made noises as
if she was hitting me--"ooh, ooh"--, and she'd just smile the biggest
smile. Then I'd pretend like I was going to get her, and she'd cringe
as if she was trying to keep away. I also got a sweet laugh out of her
as I tickled her feet. She stood for a few minutes and danced while
standing. This little girl is feeling so much better!
It's so amazing to see. I'm pleasantly baffled. Since
we've been in this step-down room, her heart rate, SATs, and breathes
per minute have been wonderful. She's not required any oxygen, even
when sleeping, which is not how it's been at home. It's quite
miraculous!
So I want to say that God is good. But it almost doesn't
sound fair to say that because what if something bad had happened to
Lily? I would like to believe that you would still hear me say that
even if something bad had happened. How could I not? We have been
given (so far) three amazing years with Lily. In our sorrow, we have
learned what it means to be held by God. We have received the kindness
of strangers and those we know. We have held our family together when
statistics show that we could be broken. And the list goes on. I
acknowledge this for the better and for the worse. Yes, God is good.
So I struggle with this because it's not just about the answered
prayers. Because I think a lot of people want to give God credit and
call him good when the prayers are answered. But sometimes, they're
not, and how easy it would be to say that God failed when the prayers
aren't answered. But I think if you take a keen look at the little
things in between, and you count those blessings, and you let God take
over your life when things aren't going well, that's where you find His
goodness. It's there. Always has been, always will be.
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Love this! So glad she's feeling better and I totally get the dichotomy of God is good and unanswered prayers. My first thought when I see someone who is pregnant now is "oh, I hope things are okay." Then I wonder if "okay" means that I'm hoping to deny them the blessings that come from knowing and loving one of these precious children. My prayers are with you for many more years of Lily.
ReplyDeleteJust said a prayer for Lily to receive her needed nourishment, keep it down, and continue to thrive. Thank you, Jill, for the beautiful testimony to God's sovereignty and goodness, even in situations that may--at the outset--seem "bad." It is my hope and my prayer that she will indeed feel better on the flip side of this surgery than she did before. Then we'll "see" it was truly God's protective hand allowing this problem to be exposed and corrected. He is SO good and loves this little girl with a perfect tenderness and mercy we cannot even imagine, as He sees the "big picture" that our human eyes do not. What an awesome God!♥Momma Ray
ReplyDeleteI see love and I believe love, your blog is interesting, thank you for sharing!
ReplyDeleteYou are a brave mom, Lily is an angel, I like her!
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